Is It Time for Rheumatoid Arthritis Awareness?

There have been some diseases that have been highly successful in achieving public awareness. RA is years behind them. Take diabetes and breast cancer for example…

It seems like Rheumatoid Arthritis awareness is overdue

One of the first blogs I read was a post by Sara called The Loser Disease – still one of my favorite blog posts of all time. I remember wondering whether I’d ever write about awareness on my own blog someday since it had already been done. I had this crazy thought that since it had been written, people would listen and it would not need to be said over and over.

We can laugh, but I wish I had been right. Recently we discussed some of the shocking RA statistics: RA incidence is increasing; the shortage of trained rheumatologists is worsening; mortality for RA is not decreasing; the amount of money spent on RA research is a tiny pitiful pittance in comparison to Lupus or MS or Diabetes and other conditions even though they are more rare. (I assume the study was referring to Type 1 diabetes.)

Society encourages diabetes treatment

One of the most widely recognized diseases is diabetes. People know enough about diabetes to encourage patients to take care of themselves. I was shocked to see a blog on Tudiabetes discussing “dia-cide” – diabetes patients who won’t manage their disease even though we all know that is dangerous. Family members were telling stories of concern for diabetes patients and how they try to get them to treat it properly. It was such a contrast to the many stories here telling of family members discouraging RA patients from medical treatment, proposing juices or supplements as alternatives to state of the art medicine. The low level of RA awareness leads to such contrasts in behavior. People are confused about RA as it is lumped in with arthritis.

Is there too much pink?

Another link I was sent this week comes to mind. Alicia at WEGO wrote a blog challenging health advocates to learn about a disease with less public awareness than breast cancer during the month of October. She asks, “What health conditions or causes are being overlooked thanks to the breast cancer awareness wave?” As a 2-time breast cancer survivor, I think she’s allowed to ask that.

I think it’s possible that the Pink Movement has done what it needed to do. Cancer does eclipse all other diseases and breast cancer does eclipse all other cancers. It has reached saturation point. I think I commented right after Alicia’s post went up, planning to come back to hear others’ opinions. It’s been three days as I write this and all one can hear are crickets chirping so far. Why did no one comment?

What are your RA awareness ideas?

I’ve said that researchers and physicians ought to read the comments on blogs as an excellent resource. Your comments have taught me so much about RA and what people are thinking about it. For example, readers’ comments showed me how intensely RA patients want to see the name of the disease changed to increase awareness. If someone mentions a name change, there is an instantly popular post on Facebook. Comments on yesterday’s blog were striking. It sounds like a lot of people are ready for RA awareness. I think people write letters to me more about that than anything else (saying they wish people understood what RA is). I have some ideas we can talk about more soon. I hope you will share some of yours in comments here on the blog so we can build on the creativity of one another. What about a color? Do you want to hold on to purple and blue even though they are already associated with other diseases or “arthritis”?

This entry was posted
on Saturday, September 25th, 2010 at 10:51 am
and is filed under Reality Check.
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